RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.

I am a 34 y/o woman, and have had RLS for a long time now. I finally got it diagnosed in 2004, treated with Mirapex. After augmentation, and a switch of doctors (I'm in LA now, and fortunate to have Dr. Buchfuhrer), we've tried a cocktail of different opiods, and settled on a low dose of Methadone.

All was well, but now I'm pregnant. This is my second pregnancy. My RLS was bad with the last one, but this time it's even worse. I am miserable.
Currently in second trimester. I started tapering, and am now down to only 2.5mg/day, not a therapeutic dose at all (I was on 10-15mg/day), and Ambien. Dr. B is comfortable keeping me on a low dose of Methadone ("Class B in low doses"), but the OB and Perinatologist (who I was referred to, because of my medication use) want me off. There seems to be a conflict of opinion between the docs about what is safe, and what isn't.

I do know the facts: all babies born with opiods in their system will have some sort of NAS (withdrawls). How severe the withdrawls are, depend on dose, and mother's metabolism. Some babies just need observation, others need a lengthy detox in NICU. All babies born with opiods in their system will be visited upon by social services, and parents will be investigated. We are not the types to be under scrutiny of forces that can take children away. It scares us to death.

I have been very motivated to get off of the Methadone and have a 'clean' baby. But I am also miserable. I have RLS 24/7 now, with shocks running up and down my legs, uncontrollable twitching in my right leg, gnawing wrists. I just don't know what to do. On one hand, RLS isn't some sort of deadly condition. I can just suffer for the next six months. But then again, I am suffering and am miserable. Every night brings anxiety and tears. I hate living feeling like this, but I also hate the idea of poisoning my baby with drugs.

I do massage on my legs, stretching, heat and compression therapy. It's nothing that really changes the RLS, it just distracts the symptoms.

I just don't know what to do. It's becoming a truly personal decision, and I will have to fight to either make my OB and Peri support me, or fight my body and mind. Should I go back on the Methadone and deal with the consequences later? Or do I suck it up and twitch for the next six months? Sleep doc answers Methadone, and OB says suck it up (although she is sympathetic -- apparently her own mother had RLS). It's hard asking anyone this question, but I think it's easier getting the answer from those of you who know exactly what RLS feels like.

I wish I knew the answer, I wish I could help you. You are in a bad place, especially since the doctors have conflicting theories. I know it would be hard to deal with RLs, especially since you have it 24/7 and its hard to think of your baby being born with an addiction.

Just wanted you to know -- I care. But I guess it just boils down to, you are going to have to examine the consequences and make a decision. No one can make it for you. Others can make suggests etc. but you have to decide for yourself.

Keep us up to date, and I wish you the best

BETTY/WV

Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

The symptoms of rls are so disturbing and crazy that the thought of coping 24/7 (I am also 24/7) without medications is unbearable and yet there is baby to consider.

It isn't helping that the docs aren't quite agreeing and the decision is with you totally.

If you go the route of medication - the thought of social services being involved is rather frightening. An awful situation to have to be in. I'm sorry I cannot help but as Betty says in her post, we care and think of you.

Please stay with us and let us know what you are doing, how you are doing and what you decide.

As the others have said, this is a decision you have to make yourself.

Some things to consider: apparently methadone-addicted babies get over it and are normal after withdrawal - that said, you should check if anyone has done long-term followups eg do those babies have more risk of addiction later in life? that's the only one thing I would be worried about.

More thoughts:
Having a baby inside you while your RLS is unbearable HAS to do bad things to the baby. You don't get enough sleep, and your body is flooded with stress hormones, which flood the fetus' body too. You don't get enough growth hormone (which repairs things) and all the other good stuff that happens during sleep. Balance that against the methadone. 9 months of stress hormones day and night in its little body and not enough of the good substances.

Consider your own physical deterioration, and how when that baby is born, s/he will need you at your best to help her through those crying nights and frequent feedings, she will not want you frazzled, with your patience worn out.

Social services scrutuizing you is an inconvenience, nothing more. The person who "investigates" could be anyone, a new graduate who thinks she knows more than she does, an experienced, sensible person, anyone. What matters is that you're confident that you did what you had to do. Don't let ANYONE make you feel bad for having a horrible disease. And another thing, if you're on a wee maintenance dose like now, you will still get the scrutiny but will not have had enough relief to be able to deal with it calmly and non-emotionally. People in the midst of RLS torture can convince no one of anything except possibly that they're insane so make sure your hubby is around to explain things.

Do you know if you'll be able to breast-feed if you're on methadone - the baby will be addicted anyway, can you give him/her some breast milk during the withdrawal? For sure if you're not on methadone, you will have to go on it immediately once she's born, and she will get no breast milk whatsoever.

Keep searching for answers, and maybe start two lists, of pros and cons... make your decision soon, and whatever decision you make, don't regret it. Seek all the support you can get from husband and friends, make sure they know how much you're going to need them, especially if you go the no-meds route. Ask your docs to provide you with information on specific babies who've been born addicted. Best of luck.

Ask Dr.B (or whoever you currently see) about using Suboxone instead of Methadone.

I think it is even safe (don't quote me on that) for breast feeding.

The stress of RLS will not be good for either you, or your baby. This is the first most important time of development for your baby. You need to keep it healthy.

You really should be on either Methadone or Suboxone. Don't let society box you in like that - as long as you stand up for yourself and they have no shred of evidence you are taking one of these medications for anything other than legitimate medical reasons, they can't do a damn thing to you.

I can say there is a light at the end of the tunnel --- APA says Methadone in low doses *is* compatible with breastfeeding. It only comes through in minute doses.

Methadone vs. Suboxone -- the docs agree that Methadone is the gold standard for necessity-in-pregnancy. It's been around a very long time, and used successfully in pregnancies. Research I have read also shows no effects on babies (in short- or long-term development), once they are detoxed.

The biggest thing holding me back is the thought of having to put this baby through withdrawls, the scariness of CPS (although we have nothing to really be scared of, we're totally normal, stable professionals, quite boring and with a healthy toddler... we'd hope that CPS would take one look at us and go off to find better cases to investigate, but they have absolute power, and with absolute power comes absolute corruption, you know?), and a lengthy stay in NICU. I've been reading up on a Methadone/Mom support board, and some of these mothers say their babies are in the NICU for *weeks.* We're talking upwards of two months, as they have to detox really slowly to prevent seizures and all sorts of nasty things. Not exactly an easy time here. And it's really hard to say how long the baby will be detoxing, as there doesn't seem to be a huge correlation between maternal dosage and fetal withdrawl. In general, lower doses result in smaller DTs, but it's not always the case. I do know that it's at least five days, average is 2-3 weeks, but can go 6-8 weeks, or more. It's not something I *want* to do to my newborn, my toddler, my husband, myself, etc. I can't just think about me and my effin' legs. This is what makes it so difficult.

Thanks for your support. I am tired, but not so frazzled that I'm at the end of my rope. At least not yet. I'm taking Ambien, and just sort of dozing through the night. I have a couple of weird get-ups, which involve a doubled up pair of socks filled with rice in the middle (I heat it up in the microwave), sprained ankle braces, and a foot massager. A pair of compression stockings are on the way. I just sort of rotate through different distractions to help me doze off.

I keep on telling myself that I did it once before (my son is now 2.5 yrs old, went through the pregnancy on nothing), so I can do it again... I think....
I'll see Dr. B on Friday, and see what he has to say. Hm, I know what he is going to say, but I need him to duke it out with the OB and Peri. I see the OB in two weeks, and Peri is in four. Time is just crawling by. Every day pregnant feels like four days, it seems.

Regarding those mothers. Was this a general forum for anyone, or a specific societal makeup?

I.E if these mothers are on Methadone for drug maintenance versus something chronic pain, I think it will make a big difference in their observations. MMT patients are often on MUCH higher doses than someone like an RLS patient, or even a chronic pain patient. MMT patients can be on 100+mg's easily.

Anyway here is an article I posted in another thread recently, about Suboxone vs Methadone for pregnancy.

I am someone who does know about buprenorphine; I have worked with it for over 10 years, and buprenorphine has been around for over 30 years. In fact, before epidurals buprenorphine was used to treat pain DURING LABOR, as it doesn’t carry the same risk of respiratory depression as other opiates. So understand that buprenorphine has been used for years as a ‘good medication’ for treating pregnant women in labor. It is NOT a ‘new drug’—only the patent and formulation are new.

We have heard from only one person in the history of the forum (no idea where she went) who has taken buprenorphine for her RLS and she said at the time as little as 1mg/day was working for her.

In addition here is another important citation from the article (he lists his citation sources as well, I believe so they can be looked up)

From another of the attached papers:

Regarding Subutex and buprenorphine: it does not seem to be teratogenic in humans or animals. Administered in monotherapy form as Subutex, it has been used successfully in opioid-dependent pregnant women as a maintenance replacement opioid. A 2003 review of the available clinical studies has been published covering approximately 300 pregnancies. Compared with methadone, a lower incidence of NAS (neonatal abstinence syndrome) has been reported in buprenorphine-exposed neonates. The severity of NAS is reduced as assessed by total opiate required to treat and length of hospital stays. Some data suggest that the placental transfer of this opioid may be limited in comparison with others, such as methadone, thereby limiting fetal exposure and the development of dependency. Deshmukh and colleagues have demonstrated that a large proportion of buprenorphine is metabolized to Norbuprenorphine, the only metabolite formed as determined by high-performance liquid chromatography and mass spectrometry, by placental aromatase (CYP 19) within the microsomal fraction of the trophoblast.

Thanks for the article, Zach. I'm going to see if I can access the original studies to the sleep specialist and OB, and see what they have to say. So far, my sleep specialist was most comfortable with the low dose of Methadone. Something to do with it burning more cleanly in the body, slower metabolism, more effective at lower doses.

As far as using Suboxone in labor, I don't think this really applies here, as using an opiod one time (in labor) doesn't really compare with the build-up of nine months in utero.

And you're right, most of the studies done have been on MMT patients, who range from 100-240mg/day. But there is some anecdotal evidence (methadonesupport.org > MOM forum), that even mothers on low doses have babies with lengthy NICU stays. BTW, that forum is a great support to anyone on Methadone, pregnant moms included. I had a great phone conversation with a mom who has been through this, and is now a nurse and patient advocate. Just putting it out there, if anyone is going through this...

And here is a link to an article that studied women on Methadone for pain management (=low doses), resulting in only 11% needing medical intervention. But the study was small (only 19 women), so you have to take that in account, too.

I'm not so sure those conclusions were based on labor-time administration of Suboxone. I think it was more a point about the fact that's what they used to give people, and its nothing "new" and untried.

Whatever the case, if you find the studies it should be easy to get (hopefully) what those periods were. I'm pretty sure in terms of the article written, the guy was advocating that Suboxone vs Methadone for a full-term pregnancy, in his opinion has Suboxone being the better drug for the baby to ween off of.

Well, I met with Dr. B on Friday and had a good conversation with him. I love how this doc never makes you feel rushed, when asking questions. Anyways -- here is where I'm at.

I'm back on Methadone. 5mg.

As he sees it, we have to weigh the risks between a mother on a low-dose, which doesn't put the baby at risk in-utero or long term, to a mother who is sleep-deprived, which can put mother and baby at risk in-utero.

And as I see it - I have two options:
1) Continue on nothing the next six months and be sleep deprived, miserable, and anxious.
2) Be rested, yet shamed and worried about what is going to happen after the baby is born.

I chose Door #2. And I feel like a terrible mother. At the same time, I don't think I've been given two great options, anyways, and both have drawbacks. At least this choice leaves me with restorative sleep.

Actually, it's funny -- I took my first 5mg dose around 6pm (before going to a movie), and my body didn't know how to react. I had probably an 80% reduction in symptoms. I couldn't even sleep last night, I was up until 2:30, just laying in bed. My body seemed to be marveling at the lack of uncomfortable tension and twitching. I woke up feeling better than I have in a long time.

I have an appointment with my OB in a week, and the Peri in two weeks. I am still really scared to be on this road, as I know the baby is going to be born with a controlled substance in his/her system, and may possibly need treatment. However, Dr. B says he has taken several (two dozen?) women through pregnancy on a low-dose (under 10 mg) of Methadone, and does not know of any problems that happened after birth.

There is only this moment right now. Right now, you must take care of yourself.

What's ahead is unknown. It could be horrible....just as easily it could be a non-issue. I know it's easier said than done, but see if you can save any judgments of yourself until it's over. And then even see if you can avoid them. We can't see the future, we have to make choices and we never deliberately make "bad" ones! We simply do the best we can with what we have.

I don't know you, so this may seem presumptuous, but I'm glad you made the choice you did. I hope that someday you are also.

I echo the others. I don't like to even imagine the horror of not being medicated ... I would have supported you if that's what you'd chosen, and boy, would you have needed it, but I can't help thinking you've made the right chose, for you AND for the baby, to not be tortured throughout pregnancy.

Julie, don't forget the shame is artificial. Well, it feels real to you, but it arises from wrong thoughts, and from un-informed social pressures.

You can take the opportunities that will surely come your way over the next few months, when you might have felt shame, to instead re-educate anyone who seems to have an open mind, and stop associating with those who don't.